Dear Melissa,
I am just reading your post about your daughter’s very long episode and my heart goes out to you and your family - how dificult this must be for you.
Have you thought about going to Stanford to see Dr. Mignot and see if there is anything he can suggest or do to help? He is a world expert on KLS and a really nice guy. I am sure that there are some medicines that you could try. You can contact his nurse at or call there and see about an appointment.
I hope this helps and that your situation has improved in the last few weeks.